Hi fellow chemo starters. I joined forum today having had my first oncology consultation yesterday. I'm due to start chemo (HPTC) on 21st June providing they can fit all the tests in before then.
I'm her2+, hormone - grade 3 lymph node involvement. Tumour currently approx. 5cm but growing fast so needs shrinking before I can have surgery.. Anyone with similar diagnosis?
I'm have my pre-treatment council on Monday so any advise would be appreciated. What is a cold cap?
Minimad, some have pre meds some don’t. Depends on your regime and your oncologist. This time I don’t which tbh I prefer as the pre dosing steroids made me super hungry and the last thing I need is to be bigger than I already am (thank you seven years of Letrozole!) I have iv steroids when I go to the chemo suite then three days worth straight after.
Do ask nurses about the acid, there are multiple drugs you can try. One will work!
I am sorry to hear that Louise, this happened to me with my first lot of chemo in 2011. They pumped me full of antibiotics, took endless bloods and after five very boring days (we practiced each other’s make up and eyebrows) they let me home, infection sorted, newts intact. It’s a scary thing but they do this all the time, make sure all visitors are healthy and no sickness. You have been unlucky to get this first round, did they give you Filgrastrim to inject?
Hi 10 days after 1st round - Docetaxel and Carboplatin - and I have been admitted to hospital. My temp is 39. They say its an infection - but dont know what sort of infection. My Marker is 110. I'm not sure what the marker is what that means. I have the Neutropenic thing. My white blood count is very low. Feeling very fed up
you mentioned acid indigestion.... i have had a real bad sharp pain behind my chest bone in the middle. Doesnt feel like burning or burps..... like its acid....
taking a Lansoprazole once a day.... but still getting twinges.
will talk to nurses when i go for my second session on friday...
did you have some pre meds before your first treatment ? Do we assume this is going to be the norm everytime before our chemo ??
thx xx Jan 💖
Hi, all went well, I need to have a pic line put in for next session as veins a bit hidden! I feel fine in myself but apprehensive what’s to come. Procedure painless. One drug made my nose hurt a little bit but only lasted 5 minutes. Good luck tomoz xxxx
Thanks for the prunes tip Debi2, I was eying up a tin in my cupboard earlier so some weird form of mind read going on maybe?
spot on with the anti sickness if you are still feeling or being sick or even the dreaded acid indigestion then ask for something different.
I started my chemo on June 3rd, like others I’m having chemo first, 4 cycles of EC, then 4 pertuzumab, trastuzumab and docetaxal - so 6 months altogether, every 3 weeks.
I was wiped out the first few days, but feeling better this week.
I had the picc line fitted, and have just had the dressing changed today.
I had the 💩 issue last week, I tried lactulose as recommended by the nurse. We will see what happens next cycle!
My scalp feels a bit sore, so I guess my hair is going soon.
Its been great to read all your posts and hear about similar experiences.
Just popping in from April starters - i have been having two prunes on a morning and two on any evening (tinned kind in syrup) and they have been good for the plumbing issues. i am trying to eat a lot of fruit too although i do slather them in cold custard which i seem to have a craving for at the moment!!
I also had to change my anti sickness because my first lot made me feel more sickly. The nurses are there to help you so do ask if the tablets aren't working.
Wishing you all well.
so pleased Picc line was ok. I asked for a portacath but my hospital only does cannula....😖😖
Good luck for friday, we can compare notes in the evening.. tc xxJan 💖
For those having a picc line fitted, it was done in under an hour, no more painful than having a cannula put in 😊 could have driven myself home but my step dad was being taxi today due to me still taking the codeine. Good luck ladies with chemo this week, I am back for number two on Friday 😊
Ruby so good to hear your news....💩💩 i also have had some success today but pains in tummy pretty awful... and heart burn....again....and again....
def feeling peaky for past 2 days.... blood test tomorrow at drs. Then second session friday.
is yours tomorrow ?
good luck to the ' first timers ' this coming week... thinking of you .. 💖💖
I'm the following day for my first one. So completely empathise with you. Let me know how you get on. Good luck xx
My first chemo is tomorrow. Nerves have set in now. Been on two weeks of antibiotics as breast red and slightly warm but they’ve not worked so stressing about that although it doesn’t hurt. Feeling scared of the unknown xxx
Thanks Kip, yes they gave me that as well while I was an inmate in hospital this past week! Good tip!
However, exciting news I am sure you will all be thrilled to hear...
i have had a 💩 😁
not going to let it get so bad bad next time, still on codeine so need to keep on top of it!
having picc line fitted today and woke up this morning really hungry having had no appetite for a week or so.
wish the washing machine noises in my ears would stop and praying the hearing damage is only temporary!
how is everyone else doing today?
Hi all, oh dear the back end problems hit me too, I think it is the steroids which do it. I was told to buy a bottle of lactulose (it's in Tesco etc) and used to take a couple of spoonfuls before bed for the first few days of each h cycle and tils things improved in that department. Once steroids were out of system things were normal again.
Mini mad - I was given my movical on prescription by the chemo suite. It’s a powder you dissolve in water, tastes like lemon squash it’s ok. Not bloody worked yet though 😳😂 contact your chemo suite and let them know, they will sort you out for free 😊 here’s to normal 💩😉
glad you are feeling better now you are back home 💖 take things easy.
tonight i had some nausea kick in so have just taken Domperidone. Hoping this helps me some.
also i think im like you....the back end plumbing isnt working properly... not passed anything today but yesterday i managed ( sorry everyone ) 3 hard marbles... im eating loads of fruit, wholemeal bread, weetabix and plenty of water. What is Movical ??? Over the counter or from hospital ?
Hello everyone, hope you are all as well as can be expected, I am recovering much better in my own surroundings as predicted although still pretty off my face from my own personal pharmacy....however it is now day seven without a 💩😳 think the codeine and morphine have broken my plumbing! Chugging Movical and pretending it’s 🍷...
good luck for Thursday Zed, I found FEC doable personally, my top tip if you feel sicky or acidy is to remember that they often start you off with the cheap anti sickness 😉 don’t be afraid to ask for something different if it’s not doing the trick for you xx
Hi everyone. Hope you all feeling a bit better. Just been for my new patient appointment with nurse & been given my first chemo appointment this Thursday (FEC). Will try the cap. Scary stuff
At least they have let you out..... no matter how bad things are they just feel a little easier when you are in your own home.
You sure are having a crap time arent you... we just dont know what this awful stuff is doing to our bodies and how we react...
lots of rest inbetween loo trips, water to flush everything nasty and be kind to yourself.. things will get better you just gotta go with it... sorry going on too much.
tc Jan xx
sorry to hear you've felt grotty after your first session. Just have to go with what your body tells you.
i'm not doing the cold cap as when i mentioned to my surgeon i have headaches she said the cap could make them worse.
So i now have my ' wiggie ' and have ordered some cotton head scarves in different designs and a couple of sleep caps , so you could say i'm ready.... not really but no choice......
hope things improve for you. I have my second session next friday....
good luck .... Jan xx 💖
I have escaped the hospital! They agreed I could just as easily have the headache from hell and 🤮 in my own home so have let me home with a carrier bag of antibiotics for the uti I picked up, codeine, anti sickness and oromorph. Nice to be home but still feel like 💩 to be honest! Can’t stand up for more than a few seconds...am considering slithering to bathroom on my belly!
tomorrow is another day for all of us, let’s hope it’s a better one 😊 XX
Had my first chemo, EC, Thursday.
Friday was OK for me, but Saturday, it was like I lost the day, just totally knackered beyond belief. Today I feel a little better, but I'm guessing I'll be resting up most of the day.
I did use the cold cap. The first 30min before chemo was OK.
Then had to have 90min after chemo. The last 30min where horrible. I felt sick, was teary, just wasn't comfortable at all.
I'll give it one more go, but those last min were not nice at all.
I'm still just lethergic is all I can say. Feel very weird not being able to just crack on with things.
I've signed up to the race for Life for July 14th. Got 20 on the team so far.
Hopefully get into some sort of regime of training soon enough. The race is a few days before cycle three, so should be OK for it.
Hoping everyone is OK.
My head is a little hazy, not sure how else to describe it.
Well started on the tummy jabs, took out of fridge half an hour before. John did mine and didnt feel a thing.. yay........ no problem! Good luck with yours xxxx 💖
thanks for your update... hang in there girlie 💖
took my jab out of fridge 1/2 hr before, john did it for me n didnt feel a thing...yay...
stay in touch yeah ?? 💖💖
Hiya, I am still in but pain improving although now have a uti! Too many hospital carbs!
the thought of the injections is far worse than the doing, yes you pinch some flesh and put needle in at angle. It is self retracting. See how you go but I found it helpful to a) take out of fridge half an hour before and b) have some paracetamol handy (check your temp first) in case of fluey like symptoms
I have to have 5 days of injections too, it’s to prompt the bone marrow into producing more white cells ( I think that’s what they said) my hubby is going to try to do mine god help me 🤔
Sorry to read you are having bad symptoms... maybe your are out of hospital now ..
i will be starting the Fili....something tummy injections tomorrow. Was never told i would
be having these so bit of a shock. My husband is going to do them for me.
once you've pinched the skin do you put the needle in at an angle ? Was told this made it less painful or just straight in....
do hope things are beginning to improve for you..big hugs. 💖
Welcome samarshall66 😊
Chicken hope it went ok and cold cap not too bad?
i am still an inmate at my local hospital, came in for a head ct on Wednesday been here ever since. Severe headaches probably weird side effect of chemo or Filgrastim injections. Now got uti and sickness so looks like I will be here for a couple more days. Keep smiling ladies Ruby x
Thank you for this great information. A bit daunted by the journey I’m about to embark on. Start on 18th.
Hope your are OK now Ruby.
I've been for my 9am chemo and been sent home til 12.30 as they've double booked the cold cap, so I'm going second.
My mam can step in to look after my little boy after school, the other lady had child care issues, so I'll be in today but I might have a different day next time.
I'm told I may need a picc line, so let us know about that ladies
I'll update you later in the week for my first chemo
Good luck for today Chicken81. Felicidad, I am having my picc fitted on Tuesday have been told I can drive home so hopefully shouldn’t be too sore.
i have spent last 24 hours in hospital due to severe headaches, head ct scan looks ok awaiting results of lumbar puncture then if ok hopefully home today ready for next chemo tomorrow. Am in isolation room as not sure if I have infection or not. Ruby x
Chicken81 : it was called a Glomerular Filtration Rate test,or GFR, where they injected me with a small amount big radioactive tracer, and asked me to return 3 hours later to have a blood test.
I just got the appointment for the PICC line on the 18th, early afternoon.I hope I don't feel too sore because I have tickets for a show in the evening! 😐
All the best for Thursday ❤️
Felicidad, how will they check your kidneys?
I know I had a blood test sent off and I never heard back and that's it. I think that kidney check was more for my MRI, so just interested to here.
I'm all ready to start Thursday for my first EC, got measured for sizing of my cold cap at assessment Monday, so it's nearly time to start 😕
Hi Minimad -Good luck for this Friday! I am also TNBC but I will be on EC first and then Paclitaxel and Carboplatin (6 months in total).I am still through some testing (tomorrow they test my kidneys function!) and expected to start around 20th June(ish)
Rubythursday - glad to see you are not having too bad side effects so far! 🙂
same regime as you, started last Friday. Fatigue bad, headache has been worst so far but more likely a reaction to the Filgrastrim injections. Have been prescribed codeine for the pain. Bit of light hair shedding but otherwise not too bad all in all!
good luck for Friday, remember everyone is different xx
Hope you dont mind me jumping into the June chemotherapy thread..
starting my treatment for TNBC this Friday 7th June.
one day a week for 12 weeks of Paclitaxel.
one day a week , every 3 weeks for 4 cycles of Carboplatin.
anyone on here who can give me any idea what side effects are the most common ?
i know there will be hair loss 👩🦲👩🦲!!!
thankyou ladies. X💖
I just love the photo showing your lovely pink cheeks - I remember them well when I was on all the steriods before chemo - that was 2 years ago now and it's funny how a photo like yours has brought it all back to me!!
Good luck with your continuing treatments x
Well Arnold and The Trespasser and going to get obliterated soon so that’s a good thing! I didn’t name my tumour, I have had so many tbh I would just about have run out of names by now! I just call my cancer the bitch. We go to war every few years and I kick her butt!
Gig was great last night, been dog walking and gardening this morning, steroids are great uppers that’s for sure! Shame about the bright red face! No sickness yet, just a few sicky burps, first filgrastrim injection today - no issues but stocked up on paracetamol in case I get the lower back pain I got last time!
i was never a scout and got kicked out of the brownies for not doing what I was told but I think I am prepared for most eventualities!
I've named my lump Arnold.
After Arnold Swarchenegger.
From him in kindergarden cop, 'its not a tumor, no one's going to die'
My hairdresser suggested it so we call it a name rather than cancer all the time, less scary for my little boy.
Arnold's gonna get drugged next week!
Anrold had a metal chip inserted.
Arnold needs to be scanned.
Actually works really well.
We'll be saying good bye to Arnold...
Rubythursday - Well done for Chemo n1 and have a great time at the concert! And thanks for your offer to give me info, I will be asking a lot for sure 🙂
daisydi so Faith shampoos and conditioners will be ok during chemo? That´s a relief because I usually use them so I don´t need to get a special one - there are plenty of things on my shopping list already.
Dsa1980 - fingers crossed this time it get really kicked off! All the best x
I am thinking on a name for my tumour. At the moment my favourite is TheTrespasser - since it is illegally living in my body without my permission
chemo number 1 done and dusted, was there for eight hours in total. Off to Leicester now to see The Manic Street Preachers. Sick bag, thermometer and antisickness drugs packed just in case!
gotta love steroids but what goes up must come down!
have a lovely weekend!
with you on the 'doing it again'
I had chemo in 2014 - i remember it wasn;t as bad as i'd predicted.
This time i am having Paclitaxol and Carbo weekly for 12 weeks - REALLY hoping it kicks it's butt this time!
Thanks for the link Nikki/mai17. Some good stuff on there.
My mantra when previously having chemo in 2011 was “This too shall pass” and it did.
The thickness and length of your hair doesn't affect it working, a know a lady who has just become an ambassador for Baxter who make the machines, i could put you in touch with her if that would help?